The Burden of Stroke on Caregivers at 1-year after Discharge

Original Article / นิพนธตนฉบับ

ABSTRACT

Objective:To investigate the burden of caregivers at the 1-year follow-up in stroke patients who had received inpatients post- stroke rehabilitation, and to identify factors associated with burden.

Study design:Cross-sectional study

Subjects and setting: One-hundred and sixty stroke patients who were discharged from the rehabilitation wards of nine ter- tiary care hospitals and their caregivers

Methods: The caregivers were asked to rate the degree of overall burden, and in physical, mental, social, and economic dimensions of burden. Degree of burden was categorized into no burden, slight burden, somewhat burden, moderate burden, and extreme burden. Factors associated with caregiver burden were analyzed using univariate and multivariate analysis.

Results: Mean ± standard deviation age of caregivers was 44.6±

13.7 years and 76% were female. Regarding degree of caregiver burden, 30% rated burden of taking care as no burden, 20%

slight, 30% somewhat, and 20% moderate to extreme burden.

Responses of moderate to extreme burden in the physical and economic dimensions (19.4-20.0%) were more than those in the mental and social dimensions (12.5-16.9%). The only factor sig- nifi cantly associated with burden on caregiver was level of walk- ing ability <10 meters, with an adjusted odds ratio of 3.30 (95%

CI: 1.60, 6.83).

Conclusion: Twenty percent of caregivers rated themselves as being moderately to extremely physical and economic bur- den from taking care of stroke patients. Health policy strategies to effectively relieve caregiver burden should be developed in order to improve the post-stroke experience for both caregiver and patient.

Keywords: caregiver burden; stroke; multivariate; rehabilita- tion; geriatric

J Thai Rehabil Med 2018; 28(1): 8-14.

บทคัดยอ

วัตถุประสงค: เพื่อศึกษาภาระของผูดูแลผูปวยโรคหลอดเลือดสมองที่

เคยไดรับการฟนฟูแบบผูปวยใน ที่ 1 ป หลังจําหนายออกจาก โรงพยาบาล และเพื่อคนหาปจจัยที่มีความสัมพันธกับภาระดังกลาว รูปแบบการวิจัย: การศึกษาแบบตัดขวาง

กลุมประชากรและสถานที่ทําการวิจัย: ผูดูแลของผูปวยโรคหลอดเลือด สมองที่ไดรับการจําหนายออกจากโรงพยาบาลระดับตติยภูมิ 9 แหง จํานวน 160 ราย

วิธีการศึกษา: ผูดูแลใหคะแนนภาระในการดูแลผูปวยโดยรวม และ ภาระในดานตาง ๆ ไดแก ดานกายภาพ จิตใจ สังคม และเศรษฐกิจ โดยแบงเปนระดับตาง ๆ ไดแก ไมเปนภาระเลย เปนภาระเล็กนอย เปนภาระบาง เปนภาระปานกลาง และเปนภาระอยางมาก จากนั้น วิเคราะหหาปจจัยที่มีความสัมพันธกับระดับภาระของผูดูแลโดยการ วิเคราะหโดยใชสถิติแบบ univariate และ multivariate analysis ผลการศึกษา: ผูดูแลมีอายุเฉลี่ย 44.6±13.7 ป และเปนเพศหญิงรอย ละ 76 ผูดูแลใหคะแนนภาระในการดูแล ดังนี้ ไมเปนภาระเลย รอยละ 30 เปนภาระเล็กนอยรอยละ 20 เปนภาระบางรอยละ 30 และเปน ภาระปานกลางถึงมากรอยละ 20 โดยภาระปานกลางถึงมากในดาน กายภาพและเศรษฐกิจ (รอยละ 19.4-20.0) มากกวาในดานจิตใจและ สังคม (รอยละ 12.5-16.9) ปจจัยเดียวที่พบมีความสัมพันธอยางมีนัย สําคัญทางสถิติกับภาระของผูดูแลคือความสามารถในการเดินของผูปวย ที่นอยกวา 10 เมตร (adjusted odds ratio=3.30; 95% CI: 1.60-6.83) สรุป: ผูดูแลรอยละ 20 รูสึกวาการดูแลผูปวยโรคหลอดเลือดสมองเปน ภาระปานกลางถึงมากในดานกายภาพและเศรษฐกิจ จึงควรมีการ กําหนดนโยบายสาธารณสุขเพื่อชวยแบงเบาภาระของผูดูแลเหลานี้ และ พัฒนาคุณภาพชีวิตของทั้งผูปวยและผูดูแล

คําสําคัญ: ภาระของผูดูแล, โรคหลอดเลือดสมอง, การวิเคราะหหลาย ตัวแปร, เวชศาสตรฟนฟู, ผูสูงอายุ

เวชศาสตรฟนฟูสาร 2561; 28(1): 8-14.

The Burden of Stroke on Caregivers at 1-year after Discharge:

A Multicenter Study

Kuptniratsaikul V, Thitisakulchai P, Sarika S and Khaewnaree S

Department of Rehabilitation Medicine, Faculty of Medicine Siriraj Hospital, Mahidol University, Bangkok, Thailand

ภาระของผูดูแลผูปวยโรคหลอดเลือดสมอง 1 ป หลังจําหนายออกจากโรงพยาบาล:

การศึกษาสหสถาบัน

วิไล คุปตนิรัติศัยกุล, พวงแกว ธิติสกุลชัย, สุพิน สาริกา และ ศิริลักษณ แกวนารี

ภาควิชาเวชศาสตรฟนฟู คณะแพทยศาสตรศิริราชพยาบาล มหาวิทยาลัยมหิดล กรุงเทพมหานคร

Correspondence to: Vilai Kuptniratsaikul, M.D., Department of Rehabilitation Medicine, Faculty of Medicine Siriraj Hospital, Mahidol University, 2 Wanglang Road, Bangkoknoi, Bangkok 10700, Thailand; E-mail: vilai.kup@mahidol.ac.th

Introduction

Stroke is the leading cause of death and long-term disabil- ity worldwide. Stroke patient disability can adversely affect the quality of life (QoL) of their caregivers, including both caregiver physical and mental health.⁽¹⁾ In Thailand, the crude prevalence of stroke among people aged 65 years and older was 2.7%

(95% CI: 2.28, 3.11). Differences were reported by geographic region, with Bangkok having the highest reported prevalence at 3.34%.⁽²⁾ After discharge from acute inpatient wards, most stroke patients return to their home and require direct care from their families.⁽³⁾ Much of the support given to stroke pa- tients comes from unpaid caregivers^(4). The responsibilities as- sociated with taking care of and assisting stroke patients with daily activities induced moderate to extreme adverse impact on caregivers.⁽⁵⁾ Moreover, the greater the unmet needs of stroke patients, the greater the burden on caregivers. It was reported that time spent providing care to a stroke patient could directly and negatively affect caregiver quality of life.⁽⁶⁾ Additionally, in- creased number of illnesses and older age of caregivers were both associated with lower physical health-related quality of life (HRQoL) among caregivers.⁽⁷⁾

Caregiver burden should be acknowledged and addressed, given the potential for direct improvement in patient quality of life and the continued well-being of the caregiver. Caregiver burden can lead to caregiver stress and an inability to provide continued care. This can result in unnecessary hospitalization of the patient, which results in huge costs to the health care system.⁽⁸⁾ Many studies have been conducted on the burdens of stroke patient caregivers. Ganapathy, et al. reported on how the burdens of taking care of stroke patients with spasticity- related problems had adverse societal and economic impact.⁽⁹⁾ Moreover, 44% of caregivers reported considerable burden from taking care of stroke patients at six months, and 30% at fi ve years after stroke.⁽¹⁰⁾ Caregivers of stroke patients were also reported to have depressed mood (58%) and sleep prob- lems (89.6%).⁽¹¹⁾ Another study revealed that 61% of caregiv- ers rated their personal health as being only poor or fair.⁽³⁾ As Thai people had different culture and context from the western countries, the aim of this study was to investigate the burden of stroke on caregivers at the 1-year patient follow-up in stroke patients who had received post-stroke inpatient rehabilitation program, and to identify factors associated with patient care burden.

Methods

Participants

This study gathered and analyzed data from the Thai Stroke Rehabilitation Registry (TSRR), the fi rst multicenter registry in Thailand.⁽¹²⁾ Stroke patients in this registry were admitted for re- habilitation with various objectives including intensive or less- intensive rehabilitation programs, treating complications and training caregivers. After discharge from rehabilitation wards, stroke patients were asked to visit their respective hospitals for a 1-year follow-up examination.⁽¹³⁾ The inclusion criteria were stroke patients who had caregiver and who received and recently completed one year of rehabilitation from any one of nine tertiary care hospitals and an expressed willingness of both caregivers and stroke patients to come to their respective study centers to participate in the 1-year follow-up examina-

tion and interview. The protocol for this study was approved by the Institutional Review Board of each center. This study was conducted in compliance with the provisions set forth in the Declaration of Helsinki and all of its subsequent amendments.

Study design

This study was a prospective cross-sectional multicenter study. Demographic and experiential data of caregivers that were collected included age, gender, educational level, prior course in how to care for stroke patients, prior experience in taking care of stroke patients, duration and time spent in taking care of stroke patients, and caregiver relation to patients. De- mographic and clinical data of stroke patients that were col- lected included age, gender, functional score, anxiety and de- pression at discharge, complications at discharge, quality of life (QoL), discharge destination, and level of walking ability. Those complications comprised of musculoskeletal pain, bowel/blad- der dysfunction, anxiety and depression, pneumonia, spasticity and pressure ulcer.⁽¹⁴⁾

Modifi ed Barthel Index (BI), Hospital Anxiety and Depres- sion Score (HADS), and WHOQOL-BREF were used to assess functions, anxiety and depression, and QoL, respectively. Mod- ifi ed BI score ranged from 0-20, with a higher score indicating better function.⁽¹⁵⁾ HADS is composed of 14 items in two dimen- sions (anxiety and depression), each of which has a score that ranges from 0 to 21, with a score ≥11 regarded as indicating presence of clinical anxiety or depression.⁽¹⁶⁾ WHOQOL-BREF was used to assess QoL. QoL was classifi ed to fi ve grades, including very poor, poor, fair, good, and very good.⁽¹⁷⁾ All three of these evaluation questionnaires were previously tested and validated for their psychometric properties in Thai population.

Caregivers were asked to rate the degree of burden, the load or responsibility they perceived as a result of caring for a stroke patients. Specifi cally, caregivers were asked to answer the question, “Would you please rate the degree of burden you perceive as a result of taking care of your stroke patient in the past six months?” for each of the physical, mental, so- cial, and economic dimensions. Burden for each dimension would be classifi ed as no burden, slight, somewhat, moderate, and extreme. Factors associated with caregiver burden were then analyzed relative to demographic and experiential data of caregivers and demographic and clinical data of patients us- ing univariate and multivariate analysis. Burden was grouped into two groups: low burden (included no and slight burden) and high burden (included somewhat, moderate, and extreme burden).

Statistical analysis

Demographic data of caregivers and stroke patients are presented as mean ± standard deviation (SD) or median and range for continuous data, and number and percentage for cat- egorical data. Factors associated with caregiver burden were tested by chi-square test or Fisher’s exact test in univariate analysis. Any factors that presented with p<0.2 were intro- duced in multivariate analysis. The multivariate analysis was performed using multiple logistic regression to assess the con- founding effect of factors on caregiver burden. Strength of as- sociation was measured using odds ratio (OR) and adjusted odds ratio with 95% confi dence interval (95% CI). A p-value less than 0.05 was considered statistically signifi cant. All data

analyses were performed using SPSS Statistics version 18.0 (SPSS, Inc., Chicago, IL, USA).

Results

One-hundred and sixty stroke patients were recruited from the TSRR. Demographic and experiential characteristics of caregivers are shown in Table 1. Mean± standard deviation age of caregivers was 44.6±13.7 years and 76% were female.

Most caregivers had more than a primary school education (65.6%), never took a course in how to care for stroke patients (64.4%), and had no experience in taking care of stroke pa- tients (68.7%). Most caregivers were family relatives (83.1%) that took care of stroke patients on a part-time basis (65.0%).

Regarding stroke patients, mean age was 62.4±12.0 years and approximately 60% were male. Mean functional score (BI) at discharge was 13.3±4.5. The percentage of pa- tients who had anxiety and depression at discharge was 5.9%

and 17.8%, respectively. The number (%) of patients who developed at least one complication at discharge was 126 (78.8%). Most patients (60.7%) had poor to fair QoL. The vast majority of patients were discharged to their home (96.9%). Re- garding walking ability, 57.0% could walk more than or equal to 10 meters. Demographic and clinical characteristics of stroke patients are given in Table 2.

An overall evaluation of caregiver burden is given in Figure 1. Thirty percent of caregivers rated taking care of stroke pa- tients as not being a burden. Only 20% rated stroke care as being either a moderate or extreme burden. Physical, mental, social, and economic data relative to caregiver burden are pre- sented in Figure 2. The data from these four dimensions shows a similar pattern from dimension to dimension. Those were no burden (25.0-36.3%), slight burden (14.4-26.3%), somewhat burden (28.8-30.6%), and moderate to extreme burden (12.5- 20.0%). The four dimensions of caregiver burden specifi c to respondents who described moderate to extreme burden are shown in Figure 3. Among caregivers who rated their burden as moderate to extreme, all dimensions ranged from 12.5%

to 20%. Among this same group of caregivers, the burdens associated with taking care of stroke patients in the physical and economic dimensions (19.4%-20.0%) were higher than the burdens associated with the mental and social dimensions (12.5%-16.9%).

In univariate analysis, patient gender, patient age, and level walking ability <10 meters were signifi cantly associated with caregiver burden, with crude odds ratios of 2.21 (95% CI 1.16, 4.22); 2.06 (95% CI 1.09, 3.92); and, 2.76 (95% CI 1.41, 5.39), respectively (Table 3). In multivariate analysis, the only factor that was found to signifi cantly associate with caregiver burden was level walking ability <10 meters, with an adjusted odds ratio of 3.30 (95% CI 1.60, 6.83). A trend was observed that revealed male patients being more associated with burden than female patients, with an adjusted odds ratio of 2.11 (95% CI 0.99, 4.48) (Table 4).

Discussion

This study found that 70% of caregivers rated that taking care of stroke patients are burden with various degree. Com- pared to a study from Spain, our result was more than those reported by López-Espuela, et al. (70% vs. 31%).⁽¹¹⁾ In addition,

prevalence of stroke caregiver burden reported by Jaracz, et al. was 44% evaluated at the 6-month and 30% at the 5-year periods.⁽¹⁰⁾ When considered in a group of moderate to extreme level of burden, this study found only 20% compared to a study by Jaracz, et al. in 2014 who studied 150 pairs of stroke patients and caregivers and found that 47% of caregivers reported mod- erate or severe burden.⁽¹⁸⁾ Differences in prevalence between our study and others may be attributable to differences in ques- tionnaires. Another possible reason may be cultural. In Thai culture, it is considered an honor to have the opportunity to

Talbe 1. Demographic and experiential characteristics of caregivers (n=160)

Characteristics Age (years)¹ Gender² - Male - Female Education²

- Primary school and lower - Higher than primary school

Took course in how to care for stroke patients² - Yes

- No

Experienced in taking care of stroke patients² - Yes

- No

Duration of stroke patient care (years)¹ - Median (range)

Time spent taking care of stroke patient² - Full-time

- Part-time Relation to patient² - Relative - Non-relative

44.6 (13.7) 38 (23.8) 122 (76.2)

55 (34.4) 105 (65.6)

57 (35.6) 103 (64.4)

50 (31.3) 110 (68.7) 1.38 (0.92) 1.18 (0.05, 6.03)

56 (35.0) 104 (65.0) 133 (83.1) 27 (16.9)

1, mean (SD); ², number (%)

Table 2. Demographic and clinical characteristics of stroke patients (n=160)

Characteristics Mean±SD or n (%)

Age (years)¹ Gender² - Male - Female Modifi ed BI DC1

Anxiety DC2

Depression DC2

Complication DC2

Quality of life DC2

- Good to very good - Very poor to fair Discharge destination DC2

- Home

- Home of relative Level walking ability DC2

- <10 meters - ≥10 meters

62.4 (12.0) 94 (58.8) 66 (41.2) 13.3 (4.5) 8/135 (5.9) 24/135 (17.8)

126 (78.8) 59 (39.3) 91 (60.7) 155 (96.9)

5 (3.1) 64 (43.0) 85 (57.0)

1, mean (SD); ², number (%); DC, at discharge

Figure 1. Overall evaluation of burden on caregivers

Figure 3. Proportions of patients that are considered to represent either moderate or extreme caregiver burden for each of the 4 dimensions

Figure 2. Overall evaluation of burden on caregivers

Table 3. Factors related to burden on caregivers from univariate analysis (n=160)

Factors High burden ^A (n=79) Low burden ^B (n=81) Odds ratio (95% CI) p-value^#

Caregiver factors Gender

- Female - Male Age - ≥60 years - <60 years Education

- Higher than primary school - Primary school and lower

Took course in how to care for stroke patients - Yes

- No

Experienced in taking care of stroke patients - Yes

- No

Duration of stroke patient care - >1.0 years

- ≤1.0 year

Time spent in taking care of stroke patient - Full-time

- Part-time Relation to patients - Non-relative - Relative Patient factors Gender - Female - Male Age - ≥60 years - <60 years BI DC

- ≥15 - <15 Anxiety DC

- No - Yes Depression DC

- No - Yes Complications DC

- No - Yes Quality of life DC

- Good to very good - Very poor to fair Level walking ability - ≥10 meters - <10 meters

58 (47.5) 21 (55.3) 8 (36.4) 71 (51.4) 49 (46.7) 30 (54.5) 26 (45.6) 53 (51.5) 23 (46.0) 56 (50.9) 56 (48.7) 23 (51.1) 24 (42.9) 55 (52.9) 9 (33.3) 70 (52.6)

25 (37.9) 54 (57.4) 40 (42.1) 39 (60.0) 31 (44.3) 48 (53.3) 62 (48.8) 5 (62.5) 54 (48.6) 13 (54.2) 18 (52.9) 61 (48.4) 26 (44.1) 48 (52.7) 32 (37.6) 40 (62.5)

64 (52.5) 17 (44.7) 14 (63.6) 67 (48.6) 56 (53.3) 25 (45.5) 31 (54.4) 50 (48.5) 27 (54.0) 54 (49.1) 59 (51.3) 22 (48.9) 32 (57.1) 49 (47.1) 18 (66.7) 63 (47.4)

41 (62.1) 40 (42.6) 55 (57.9) 26 (40.0) 39 (55.7) 42 (46.7) 65 (51.2) 3 (37.5) 57 (51.4) 11 (45.8) 16 (47.1) 65 (51.6) 33 (55.9) 43 (47.3) 53 (62.4) 24 (37.5)

1.00 1.37 (0.66, 2.86)

1.00 1.85 (0.73, 4.70)

1.00 1.37 (0.71, 2.63)

1.00 1.26 (0.66, 2.42)

1.00 1.22 (0.62, 2.38)

1.00 1.10 (0.55, 2.17)

1.00 1.50 (0.74, 3.04)

1.00 2.22 (0.93, 5.30)

1.00 2.21 (1.16, 4.22)

1.00 2.06 (1.09, 3.92)

1.00 1.43 (0.77, 2.70)

1.00 1.75 (0.40, 7.62)

1.00 1.25 (0.52, 3.02)

1.00 0.83 (0.39, 1.78)

1.00 1.42 (0.73, 2.74)

1.00 2.76 (1.41, 5.39)

0.406

0.189

0.344

0.479

0.565

0.783

0.226

0.067

0.015*

0.026*

0.256

0.493

0.624

0.639

0.299

0.003*

Number (%); DC, at discharge; *, p-value<0.05 indicates statistical signifi cance; ^#, Chi-square test or Fisher’s exact test;

A, High burden included somewhat, moderate and extreme burden; B, Low burden included no burden and slight burden.

repay kindnesses to one’s parents. Accordingly, Thai caregiver respondents may be less likely to choose a response that sug- gests a negative or burdensome experience.

Given the importance of caregivers to stroke patients, several interventions have been proposed, including increas- ing caregiver knowledge about the disease in order to improve competency and improving caregiver mental health to achieve an improved sense of well-being and emotional health for the caregiver.⁽⁴⁾ A study from Japan suggested the use of care services, reducing care time, and allowing caregivers some free time as ways to reduce caregiver burden.⁽¹⁹⁾ Jaracz, et al. suggested that the way to reduce stroke patient caregiver burden was to provide education to the caregiver regarding coping strategies and time management and to provide respite care so that primary caregivers could have some added time to themselves.⁽¹⁰⁾ These interventions were developed based on the expectation of decreasing the level of patient burden and increasing the level of caregiver quality of life.

Concerning burden-related factors, this study found ‘walk- ing ability less than 10 meters’ to be the only factor signifi cantly associated with burden, with an adjusted odds ratio of 3.30 (95% CI 1.60, 6.83). This indicates that the patient’s mobility is associated with caregiver burden. As the patient with less mobility would require more caregiver’s assistance. On the other hand, no association was found for Barthel Index. This may because Barthel Index assesses both self-care and mobil- ity ability, thus might not be specifi c and sensitive enough to show any association with burden on caregivers. To explore the association between patient’s self-care ability and caregiver burden, some self-care functions that might require assistance, such as bathing, dressing, and transferring, should be explored independently.

Many studies have also reported on other factors related to burden on caregiver, including intimacy-related issues relative to stroke patients, fewer numbers of caregivers, longer duration of stroke, and more hours of caregiving in a day.⁽²⁰⁾ Caregiver burden also increased with informal caregiver support, patient age, low functional ability of patient, and low amount of so- cial service support.⁽²¹⁾ In addition, burden was also related to

caregiver health, patient gender, time spent taking care of pa- tient, and level of social support,⁽¹⁸⁾ as well as depressive symp- toms and functional status.⁽²²⁾

This study has some mentionable limitations. First, given that our study was cross-sectional in design with a relatively small study group, we were only able to identify one factor that signifi cantly correlated with burden on caregiver. Another potential limitation was that we did not use a standard ques- tionnaire, such as the Zarit Burden Questionnaire;⁽²³⁾ so, it is diffi cult to compare our prevalence results directly with those of other studies. Thirdly, while many studies suggested that the caregiver’s time spent in taking care of the patient can affect the level of burden perceived,^(18,20) in this study it was recorded as full-time or part-time only. This factor should be more accu- rately recorded in future studies. And fi nally, as this study col- lected and analyzed data from TSRR, we used Barthel Index at discharge period, which was assessed and recorded routinely in the rehabilitation ward, to measure the patients’ functions.

This may not truly represent their functions after discharge, and may not refl ect the function as accurately as other indexes such as ICF or Modifi ed Rankin Scale (mRS).

In conclusion, majority of the caregivers felt burden tak- ing care of stroke patients and one-fi fth rated their burden as moderate to extreme in physical and economic dimensions.

The burden perceived signifi cantly correlate with the patient’s walking ability of less than 10 meters. Health policy strategies should be developed that effectively relieve caregiver burden, with the objective of improving the post-stroke experience for both caregiver and patient.

Acknowledgements

The authors gratefully acknowledge the stroke patients and family members that generously agreed to participate in this study. We also warmly acknowledge our rehabilitation col- leagues at the nine participating tertiary care hospitals for act- ing as site coordinators for data collection for this multicenter study. Finally, we would like to thank Miss Julaporn Poolium for assistance with statistical analysis.

Table 4. Factors related to burden on caregivers from multivariate analysis

Factors Crude odds ratio (95% CI) p-Value^# Adjusted odds ratio (95% CI) p-Value^##

Age of caregiver - ≥60 years - <60 years Relation to patient - Non-relative - Relative Patient gender - Female - Male Patient age - ≥60 years - <60 years Level walking ability - ≥10 meters - <10 meters

1.00 1.85 (0.73, 4.70)

1.00 2.22 (0.93, 5.30)

1.00 2.21 (1.16, 4.22)

1.00 2.06 (1.09, 3.92)

1.00 2.76 (1.41, 5.39)

0.189

0.067

0.015*

0.026*

0.003*

1.00 2.29 (0.83, 6.28)

1.00 2.14 (0.81, 5.64)

1.00 2.11 (0.99, 4.48)

1.00 1.96 (0.94, 4.09)

1.00 3.30 (1.60, 6.83)

0.109

0.124

0.051

0.072

0.001*

*p-value<0.05 indicates statistical signifi cance; ^#Chi-square test or Fisher’s exact test; ^##Multiple logistic

Confl ict of interest declaration

The authors hereby declare no personal or professional confl icts of interest regarding any aspect of this study.

Funding

This study had no funding.

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